The Maintenance of Life

The landscape of death and dying has changed. Today, death most often does not happen in an instant, it is more typically a long process of life mixed in with decline and social losses that eventually and sometimes many years after an initial onset of terminal or serious illness culminates in some combination of social and biological death. British sociologist Clive Seale (1998) suggests that changes in death and dying have been accompanied by changing tactics for maintaining social life. He suggests two strategies that that have developed in response to modern death including the development of a kind of therapeutic discourse which is used to transform social losses that occur at the end of life into something meaningful and euthanasia practices where patients choose to alter the exact time of their death to have death of the body more closely coincide with death of the social being.

The Maintenance of Life is about what has developed in one present-day society to address social death and modern dying. It is based on a 15-month qualitative study of home death in the Netherlands with general practitioners, end-of-life patients and their family members. The book develops from two study findings: (1) that euthanasia in practice is predominantly a discussion, which only rarely culminates in a euthanasia death; and (2) that euthanasia talk in many ways serves a palliative function, staving off social death by providing participants with a venue for processing meaning, giving voice to suffering, and reaffirming social bonds and self-identity at the end of Dutch life. Through the mainstream practice of euthanasia talk, space has been created within healthcare which helps people live longer as active participants engaged in Dutch social networks at the end of life. Using direct observation and in-depth interviews with patients, families and physicians, this book looks critically at Dutch euthanasia policy and broader end-of-life practices from a cultural perspective and in comparison with U.S. end-of-life practices and policies. It concludes with a discussion of what lessons the U.S. may take from the Dutch experience maintaining life at the end of life.

“This beautifully written book, testimony to the power of ethnography, brings much needed clarity to end-of-life decision-making in the Netherlands. Frances Norwood shows convincingly how historically and culturally embedded “euthanasia talk” very often serves to enrich and reaffirm social life, and relatively rarely ends in medically assisted death. A book for everyone interested in how we die in contemporary society.”

Margaret Lock, PhD, author of Twice Dead: Organ Transplants and the Reinvention of Death

“This book is an invaluable ethnographic account of dying in the Netherlands, where unique conditions mean that much-needed lessons can be learned by people involved in end of life care elsewhere. The author provides a sensitive and detailed account of the integration of euthanasia and talk about euthanasia within a palliative approach. The detailed account of individual cases complements existing statistical studies of the prevalence of particular end-of-life decisions, providing the contextual information that such studies are unable to deliver.”

Clive Seale, PhD, author of Constructing Death: The Sociology of Dying and Bereavement

“As a native of the ‘tribe’ that Frances Norwood describes, I am impressed by the subtleness of her observations. Euthanasia has proved a bone of moral contention and baffling misunderstanding. Norwood succeeds in capturing the natives’ point of view in a manner that only an outsider can do. As an anthropologist I compliment her for the originality of her interpretation of ‘euthanasia talk’ as a way to help patients maintain personhood in the face of decline and to provide family members a voice that honors their central place in the life of the dying person.”

“Frances Norwood’s The Maintenance of Life exposes an interesting irony in the discourse on euthanasia. While legal in the Netherlands, only a small percentage of people seek assisted death. Euthanasia, it seems, has sparked an unofficial movement that allows for a natural life span where people value meaning-making over a quick escape from suffering; where society hears the cries of the suffering and supports them; and where the self-worth of the individual remains intact inspite of illness and infirmaries.”

Christina M. Puchalski, MD, author of A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying

“The idea that ‘euthanasia talk’ includes far more than ‘the immediate, the obvious (planning for death)…[but also serves] to affirm social bonds and social life at the end of Dutch life’ is a point that seems to a ‘native’ both right and important. It corresponds to the Dutch idea that what they have done is to make euthanasia ‘bespreekbaar’ [discussable], not only in public discourse but also as a part of the social process of dying.”

This blog was prepared or accomplished by Frances Norwood in her personal capacity. The opinions expressed in this blog are the author's own and do not reflect the view of the Centers for Medicare & Medicaid Services, the Department of Health and Human Services, or the United States government.